What’s Involved in Hands-On Care
A few years ago, Ethelinn brought her 78-year-old father, then in the early stages of Alzheimer’s, to live with her and her teenage son. “At first I was upset, because this should have been a time in my life to spend with my son,” says Ethelinn. “But there are so many positives in having my father with us. He is safe and comfortable. He is surrounded by his books and portraits of my mother. He whistles, he laughs, he feels loved and respected. Every night he says, ‘Thank you,’ and I know this is the least I can do for him. My father was always there for me, and he is always there for my son, who is learning patience, compassion, and acceptance. Is there any other way this could be?”
Adapted from Caring for Your Parents
In these situations families must make choices. Where will your parents receive the care they need? Who will be the caregiver? One answer many adult children choose is to provide hands-on care for a parent at home, either moving in with the parent or having the parent move in with them.
What It Involves Caring for a parent at home may mean providing only minimal help or it may require 24-hour-a-day assistance. Your parent may need help only with some everyday activities, such as eating, bathing, or using the toilet. Or your parent may need help with most activities as well as professional nursing or medical care.
Today, older people are living longer with chronic illnesses and disabilities. Only a very committed caregiver can manage at home without help when a parent’s needs are as extensive as those of nursing home residents. Even when caregivers take advantage of all the outside help available, the job remains intense. Some parents may need care only for a few days or weeks. For others, the need will last longer. Caregivers must be able to handle both the practical and emotional aspects of caring. Here are some factors to consider in reviewing the situation for you and your parents:
Practical Aspects Factors to consider:
- Home. Does the house have enough room for your parent and a wheelchair, walker, hospital bed, or bedside toilet? Is medical care nearby? Would assistive devices, such as grab bars, be helpful? Is there enough money to pay for outside help, the home care products and equipment your parent needs, and physical changes to the home such as wheelchair ramps and bath safety aids? What will insurance cover? Is your parent eligible for any financial aid, subsidized services, or benefits?
- Tasks Involved. Can you make sure the house is kept clean to minimize the risk of infection? Can you help your parents with walking, bathing, or turning in bed? How about working with medical and home health professionals as a member of your parent’s health care team? Are you comfortable administering medication or monitoring an illness? Will you be able to help your parent manage pain? How are you at dealing with medical emergencies? Do you know where to find and how to manage home-care providers? Where will you get any training you need, such as how to use medical equipment or change dressings? Are you comfortable dealing with all the agencies and organizations involved in your parents’ care?
- Time. Do you have the time for caregiving tasks along with your other responsibilities? Can you get leave or set your own hours at work? Could you afford to stop working, if necessary?
- Support. Will you get financial or hands-on help from other family members? What sources of community assistance are available? What other options are available if you do not provide care?
Emotional Aspects Factors to consider:
- Your Parents’ Needs. How much companionship does your parent want? Is your parent sad about the loss of his or her home? Any problems with depression, homesickness, or grief? Can you meet your parent’s need for privacy? How well do you, your parent, and your family get along? Will you be able to help your parent feel useful and appreciated?
- Your Family’s Needs. How do other members of the family feel about having your parent move in? Will you be able to spend enough time with your family? Are they ready to adjust their habits and behavior? Children may need to be quieter. Family members may be awakened in the night. How do they feel about helping out?
- Your Needs. Have you considered the potential downside of caregiving, such as loss of freedom, less time for other activities, lack of control, and stress? Are you prepared to deal with your parent if he or she appears uncooperative or unpleasant? How will you handle it if he or she doesn’t recognize you because of dementia? Is it easy for you to talk with your parent? Do you know what care he or she wants? Are you able to deal with personal and health care tasks? Can you face caring for a parent who is dying? Will you be able to ask for help when you need it, including emotional support and breaks for yourself? Are you the best person to become the primary caregiver?
Many caregivers report getting much satisfaction from helping their parents, even when the job is hard. However, it is important to reassess your situation periodically to see if home care still makes sense. If at any stage you decide you can no longer provide hands-on care, you should not feel guilty or think that you have failed. There are other options that will be best for everyone should home care become impractical.
Some of this material appears in slightly different form in Caring For Your Parents: The Complete AARP Guide.
© 2003, 2004, 2007 AARP. Reprinting by permission only.